nancyl

Dan had his surgery - it was lazer surgery to minimize his prostate. He feels much better - years of having issue and at least that pain is much better he says. Im still in Awe over how the doctors passed him and his issues off as not important. Seems like everything gets blamed on the stroke. Like a person is not a Whole person just their stroke. Finally found a doctor who was willing and able to help for that I give thanks. Ive had some friends of late who have lost their husbands - 2 I met here on stroke net and although Im from ND - I met them in NY and Connecticut - also had a friend closer to home here in ND who lost her husband last month. 2 of them have the commonality of being surprised how much they miss their husband when they passed. Its strange how on paper, what looks easier is in fact heartbreakingly harder. It looks like not having to care , bathe , toilet, medicate another person for years and years can in fact be missed. I know I will miss it when my times comes. When Dan was so sick a few months past and in the hospital - I came home to a empty house - and it was strange how it broke my heart. After almost 11 years of caring for him , and him not being home it hurt much more than I woulda guessed. I guess its a small dose of my future. I don't know when or how but as human beings, we of course ,will eventually no longer be of this world. Just some mid bathing of Dan ponderings i decided to document quick- ( explanation - Dans in the tub I sit in his room across from the bathroom and keep a eye on him so i have a few moments of free time - thus- the ponderings-- lol). I catch up sometimes and look at the stroke net and remember what a lifesaver it was in those early frustrating days of caregiving. Hope all on stroke net is well. NancyL

I reported in a earlier blog that Dan had a gastro bug--- nope it ended up being a UTI--he lingered around with that for 2 months before it was figured out. Then the shake out, the urologist here in town says Dan needs to either wear a catheter forever or I learn to cath him. Of not its kinda funny in its own sick way, the urologist has no holistic approach for us. He basically really thought Dan could cath himself. No other options- no surgical procedure etc. UMMMM - his entire right arm is stroke effected ( paralyzed) it is spastic and is just pulled into his chest. and his cognition is very effected. So when the urologist honestly thinks catching himself is a option, I know he is not looking at the patient as a whole- but just treating symptoms. Anyhow, I managed to cath Dan for 3 days and then - NOPE - no more. Dan wasn't having that. And you can't cath a guy trying to kick you. So I got him scheduled for a second opinion. And yup found out Urologist here in town is a lazy idiot. The urologist in Fargo took his time and actually showed us the same MRI that was done here in town and read by the urologist here in town. The Fargo urologist showed us Dans right kidney is basically non functioning and most likely has perforated in the past. His prostate is severely enlarged impeding Dans ability to fully empty his bladder ( causing the UTI'S ). His bladder is very thin from being stretched out so much. He retains approx 400 ml of urine, normally they do not want retention of more than 200 mg. His left kidney ( the only functioning kidney ) has 3 suspicious cysts that will need to be monitored. And yes they can surgically ( lazer) his prostate so that is not so large. So how the urologist here in town figures Dan should just live with a catheter as being his only option is a reminder lesson to me -- GET a SECOND OPINION! and always seek out a holistic doctor ,the urologist here in town took no time to learn or care about Dans needs and behaviors and options. Thank goodness for the second opinion. Dan will have lazer surgery Jan 24-- he might get lucky enough to have a really quality of life improvement . He currently sits on the toilet for about 4-6 hours a day trying to void. If he can pee - what a improvement that will be !!--- NancyL

wonderful

Long haul - thats what our stroke journey has been, a long haul. Its been a decade of ups and downs - mostly downs. And we are down again. Dan has a UTI and pneumonia he was in the hospital , darn near shut his kidneys down due to the UTI and his bladder being overful . Neuralogic bladder , from the stroke. Im supposed to cath him 2 times a day... But he cries when I do - . He had his antibiotic via IV while in the hospital, but won't let the home health people give him the remaining shots now that he is home. H e won't let me cath him again. He does still void a significant amount daily- but all we are doing is borrowing time till the next problem. He refuses all medication by mouth - won't even take a pain medication. Its ridiculous. He was in the home for a few years but I brought him home when covid hit , cause - no visitors allowed . I used to take him out daily when he was in the home, and with cover that is not a option . I write this knowing there is no magical solution - I'm really just venting, this is the place all my stories from the stroke are kept - so this is where this story gets to go .

As time moves on we lose a bit more all the time, Im like sue - watching other married couples hurts. As I shoveled snow today, I thought, Dan should be doing this not ME ! He used to take care of all that stuff. Now I do. He lays in bed and I shovel snow. He'll get up later and we will do our routine - our new routine, the stroke routine.

Glad you could travel again. Hugs!!

Truth - to both of you who responded. Dan is feeling better, sadly we missed our newest granddaughters first birthday - but via face time I got to be included and watch the party for a bit. So all was not lost this past weekend - and we didn't have to drive 4 hours ( one way) to be part of it. I've learned through the years don't push Dan it never ends well. And I have learned -- if you have no bad in your life- then you really have no good either........

WOW its been since April since Ive posted, tried to log in and it said error. Anyhow Happy its back - I was worried. This site has lots of valuable information - lots of stories . Dans not doing well - he's got some gastro intestinal bug, been to the ER couple days ago, followed up with his doc, he seemed to feel better for a bit and now he is suffering again. Seems like its always something- But thats no different than anyone else. I just wanted to check in. Oh the friend who's husband had a stroke, has had a pretty good outcome. Much better than Dans - so I am happy for them. He probably won't be able to work at his old job, but I think he'll be able to do some work and drive and maintain independence . Makes me glad and sad - I compare my world to theirs often and think - wish Dans outcome had been better. But I am happy and jealous for them. If that makes any sense-- LOL I really shouldn't complain - we have had many great things happen in the decade since Dans stroke. Many advantages others don't have , and I am grateful.

Thanks for the check in !

Ive known a gal and her family for 25 plus years -- not super close, but that connection you get with people you meet sometimes. Kinda like a mirror- they seem just like you and they are - you are genuinely happy for them and vice versa. Words can not communicate the bond. there simply was not a need for the daily communication. after Dan stroked I watched there family from afar - they were the mirror of what our family used to be and would have been minus no stroke. similar- ages , beliefs, values, childrearing , and work ethic. Well her husband had a massive stroke similar to Dans -- left brain -- extensive the whole 9 yards. Im so dishearted - they are good people - why them - why so close to me - why the connection - that guy was also in good shape , like Dan hardworker - healthy. the kinda people you only wish good things for them. And here come a massive stroke that will disrupt their lives. He is still at that critical stage - on a ventilator - cathed, getting a trachea put in tomorrow. He is most likely ( but miracles are possible) IS NOT gonna walk away from this . It is playing out like Dans. Of course Ill share my knowledge ( I think Ive had virtually every bad a stoke can throw at a person )... and Dan is/ was always a bit of a knucklehead. My friends husband was not . But the husband is getting the depression going on .... So ill sit on the sidelines and watch , we have communicated frequently since the stroke - but I of course will help with any little bit of knowledge I can . Ive said this often on here--- those GODDAMN STROKES !!!!! expletive, expletive -------

God is absolutely watching over us - gently guiding those that want it. Dan used to have seizures all the time... they are rare now, interestingly seizure drugs can cause seizures - which is why he had a couple years of a lot of seizures . kicked off the meds and now not so much... Glad your in that good place of appreciation. NancyL

I survived the surgery - I had a bit more trouble than anticipated with the anesthesia- have had nausea even 2 weeks out. And some pain and aches as well . But it is what it is... and Dan has been nothing less then great. Family has helped as much as Ive asked and needed. I have caught up on a lot of TV all if it crap - but lol - it caters to a population. to each their own as the saying goes.... I went back to work last week on Monday ( 1 week after surgery ) just half days . By noon I was tired. I'll play this coming week by ear. My job is not physical more analytical. And my little criminal clients and I have a good working relationship. I just wish I didn't know them so well. Some I've known since they were young juveniles in the 90's -- so now Im dealing with them, their children and grandchildren. Crazy - most actually none of them are "bad" people - they just never had a chance or opportunity to be anything else. Stuck in a vicious life of crime, usually motivated by drugs. So I remain thankful to work and take care of Dan and have a good enough life to continue on its journey. NancyL

I survived the surgery - I had a bit more trouble than anticipated with the anesthesia- have had nausea even 2 weeks out. And some pain and aches as well . But it is what it is... and Dan has been nothing less then great. Family has helped as much as Ive asked and needed. I have caught up on a lot of TV all if it crap - but lol - it caters to a population. to each their own as the saying goes.... I went back to work last week on Monday ( 1 week after surgery ) just half days . By noon I was tired. I'll play this coming week by ear. My job is not physical more analytical. And my little criminal clients and I have a good working relationship. I just wish I didn't know them so well. Some I've known since they were young juveniles in the 90's -- so now Im dealing with them, their children and grandchildren. Crazy - most actually none of them are "bad" people - they just never had a chance or opportunity to be anything else. Stuck in a vicious life of crime, usually motivated by drugs. So I remain thankful to work and take care of Dan and have a good enough life to continue on its journey. NancyL

at present my color would be a clear blue sky color... I'm content at the moment, and thankful because as you know my world has been black in the past. but like storms that move through the sky, eventually I have come into some clearness of a blue sky. I'm holding tight onto that vision. Thank you for reminding me and others to reflect, because only with reflection can we stop and see.

I haven't posted in awhile --- March 11th will be our decade anniversary of my husbands stroke that changed our lives.... We finished up our home remodel ( Dan came back home from the nursing home due to covid) the remodel made the home more accessible for him - and better for me to help him. But -- a couple weeks ago I was helping Dan with his bath , went to swing his leg and pop something inside me popped. We thought I had prolapsed my uterus - but turned out to be my bladder. So surgery to put that back in place is next week. Good lord- Im falling apart, literally -- LOL nothing to do but get fixed ... Kids will take care of the AM and PM duties and my sister will take care of the daily incidentals that happen. I will return to work as quick as I can -- cause I really like to work. Work used to be work and I enjoyed it enough back in the day - but I really can see apart from a paycheck what a blessing work is. Get out, see others , research, talk to clients , assist them ... etc... I don't have pearls of wisdom -- but I write to remind myself of what has happened , where I've been in the stroke recovery rollercoaster, and how I push through... Im 53 years old now... 43 when the rollercoaster ride began and sometimes it seems like yesterday and others times it seems like a century ago... But I am thankful, for sure God has watched over us and provided the tools to continue on our life journey ( like stroke net ) ...

I went and got my medical card for ND. Still experimenting - with dosage. I just take a tincture - helps me sleep, I actually have more dreams - which is nice. Dan won't try it. He had the stroke and it might help with his spasticity - but he won't even try -- lol , his choice.

Absolutely agree. Stroke net brought knowledge and the feeling of not alone. Some one had don't this before, so it can be done. I met lifetime friends on the stroke net, all thanks to Steve M and the wonderful contributors and mentors on stroke net.

Prayers -- and please be kind to yourself. Life is hard for everyone and we all make mistakes , the trick is recognizing them , learning from them and moving on. Seems to me like that is exactly what your doing . There are better days ahead along with the bumpy days. You are a ray of sunshine to many people ( I appreciate your kind notes to me on my blogs) --- So be kind to yourself.

Ive been to that point - our minds are amazing . The only reason I didn't do it. Was the complexness I believed it would have been to get my body from AZ to ND. But man, I knew I wasn't right. But it was like a dark storm that just moves in and you are lost... It took me years to get the right treatment. ECT for me. Meds sure didn't work - usually made it worse , but you gotta jump all the hoops before ECT is ever considered. And not every medical pro is in favor of it, so they just don't tell you about it - or tell you they don't know about it - but don't provide any direction. And when your in the storm you can't even hardly put one foot in front of the other. And its scary for others to even be around it. Heck ,I scare myself thinking about it. I had a class mate who's son committed suicide he was a senior in high school and had been ill for 2 years before he killed himself, she had never heard of ECT - not one doctor mentioned it as a option- and they had tried many. And that to me is wrong, it may or may not have helped this young man, but to not ever have been told of it is a shame. There is also KETAMINE for acute suicidal ideations . But people are not told these things, many times they are given a script and told suck it up. Its not usually the bill that comes due or the relationship that didn't work out those are the triggers. Its the cummulation of all stressors and our brain gets stuck - it just ruminates and won't let go. Thats my experience.

Wow -- once it got nice out here in ND then time sped up. Ive been outside puttering. stained our deck , lots of gardening... help get my brothers home together for a estate sale.. back to more or less FT work at the office. And Dan has played "nice". So I guess I'll keep him home vs. the nursing home. With Covid there is no way we could have managed anyways. So he is here( home) and Ive got a massive remodel planned to make it nice for both of us... It was on my to do list anyhow. My Middle daughter the one from MT ( Erika) is pregnant with her first due in October. So we have a new grand baby to look forward to! That will be exciting and the tentative pplan is once the house remodel starts we'll go to MT and spend a few weeks. I told my boss that and he told me the next day that he had measured his basement and there is enough room for Dan and I to come say at his house--- LOL --- He said, he'd miss us to much if we go to MT for that long... I told him sorry , but I knew he was kidding anyways. It felt good to be appreciated. And, I've thus far maintained my mental health. I did however have a appendicitis in June - it had burst just a bit - I thought it was a back issue I had - turns out it was rebound pain ( pain that shows up in another area) . Anyhow got that out and lots of antibiotics , but did good. Then early July I fell outta a tree trimming branches ( yes I know call a Pro - but I had called 3 of them - no one shows up ) so I broke a few ribs and had various abrasions . My SIL found one of his friends to come and do them . He did a great job. My son is buying a new place up further north in MN -- he currently lives close to the cities. But sold his place and has found a community for his family and more space for his kids to run - 5 acres . He said there is a lot of PUSH going on people who have the ability to leave city life are. And his work has went completely remote - so it brings him back closer to us. And anytime Dan can see his son makes him happy. Ill certainly be able to go visit more often now with Dan and vice versa. Bethany my youngest is also buying a home, here in town -- lol-- from her mother ( me) we had bought her a small house a few years ago and she is now in a financial position that she and her husband are buying it . She would love a little farm ( like Dan and I had prior to the stroke) but her husband doesn't have the skills or the desire it takes to maintain one. Beth loves her animals, but we all gotta put that in our past. We have our memories. April my oldest is busy running after her son -- sports, sports and more sports. But the kid loves it and Dan loves to watch him participate - when we can attend -- cover is making that difficult, as is the HEAT. Yes ,even in ND . We got it all - heat , humidity, bugs.... And our Covid numbers like everywhere are concerning. So we do what we can and avoid what we can. I had to replace our furnace/ central air - and Im sure glad I did, but really had no choice as right outta the gate this spring I had no air -. I work as a legal assistant and generally attend the bigger trials ( jury trials) and assist my boss by keeping a record of the proceedings and kinda do a catch all of making sure that stories match / make sense ... I love it. But due to Covid we are going actually have to use our old County Court house that was built in 1880 - the historical society kept it as it was the first courthouse in ND even prior to our statehood. But our new courthouse ( built in the 1980's ) does not allow for enough social distancing . So we gotta do the Jury Trials in the old one.... NO AIR-- Uggghhh. and No decent heating in the winter.. Im not sure what I'm more afraid of. Cold or Hot. Dan has been so good since coming home from the nursing home that Im impressed . He is trying so hard and his behavior , while not gone is far improved. He gets up everyday - except the days that I suspect he may have had a seizure in the night. Those days he just wants to sleep. But it not like it was before when I had him home. His mood is so much better, and he doesn't do all the refusals to eat or drink. And I've given up the role of " begging him". Thats on him, eat , drink - or don't. Its taken us 10 years almost to get to that point . But so far this time around - so good. Time will tell and Time will change. But for now - I enjoy how well we are doing. And I thank God for it. NancyL

Oh Sarah-- I think of you often... What a beautiful gathering -- small - full of meaning-- very special... I'd write some "words" but I just don't have any... Thinking of you.. NancyL

Of course we all are bored. I don't have to much to do, outside of working my now half days and take care of Dan. We have our little routine, Dan THRIVES on routine - Me not so much. But I really can't complain , Ive had to redirect him a few times as to my expectations of his expectations. He like to move the bar. The compulsiveness. But its been so many years I do recognize it for what it is. And for as much as I complained about his desire to frequent the casino - it sure beats sitting at home and staring at each other... lol. Eventually here in ND we will get nice enough outside that at least I can do yard work and Dan can do his compulsive sweeping. Anyhow for the most part we are doing well, given the COVID lockdown. We have a roof and food and we are healthy . In reality we are blessed.... NancyL

Sarah-- Im so glad a neighbor extended that wonderful gesture, albeit toilet paper ( who woulda thought in the past what a magnanimous gesture a gift of TP would be--lol). Renews our belief in mankind. I hope you are well, you have endured so much, I only hope that you have some "peace " . I think of you much more often than you'd guess-- that long caregiving road. Bless you girl.. !

So far it is going well, we have our "issues" but for the most part we are doing well....

Due to the Corona virus - the nursing home had to close doors to visitors and no longer allow the residents to come and go. Dan had stabilized and done very well for the past 2 years. But the biggest reason for that, His time with me and him coming to my work and the large amount of socialization with our family. The new necessary mandates required the home to close their door to protect their residents for the greater good. I respect that 100%. But it left me with a decision to make . He is home with me. So far so good. I couldn't risk the absolute regression he would have made in the home - not coming and going not seeing me. And I knew that this was gonna be a long term lock down at the nursing homes- ( and it needs to be). So I did what is right for us. Bring him home. If it works, - great. If not then , after all this is over, we can return to the way it was in the future. I asked Dan one day, while he listened to the radio if he was afraid with all the news on about the virus and he looked at me and said - very afraid..... So for now, it is what it is..... no complaints yet-- We are fortunate to have options and I am thankful for that. Extrodinary times call for extraordinary measures. Like the rest of the world , we will stay at home and be hopeful and prayerful for the best possible out come